"If the cup won't pass .... drink it"

Just some comforting words from Elder Holland at the recent General Conference held in Salt Lake Utah.... even though he was specifically talking about MDD / Depression I found this talk extremely comforting and strengthening for those who are going through all sort of trials.

http://www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng

As the caregiver of the person who is suffering from an illness ... the following words were very encouraging and comforting to me:

"If you are the one afflicted or a caregiver to such, try not to be overwhelmed with the size of your task. Don’t assume you can fix everything, but fix what you can. If those are only small victories, be grateful for them and be patient. Dozens of times in the scriptures, the Lord commands someone to “stand still” or “be still”—and wait. Patiently enduring some things is part of our mortal education.

For caregivers, in your devoted effort to assist with another’s health, do not destroy your own. In all these things be wise. Do not run faster than you have strength. Whatever else you may or may not be able to provide, you can offer your prayers and you can give “love unfeigned.”“Charity suffereth long, and is kind; … [it] beareth all things, … hopeth all things, endureth all things. Charity never faileth.”

Also let us remember that through any illness or difficult challenge, there is still much in life to be hopeful about and grateful for. We are infinitely more than our limitations or our afflictions.

My husband have been kind enough to get a housekeeper for us on Tuesdays and Thursdays so that I am free to attend to all our children as well as helping Eden prepare for her upcoming year end exams I Learned a few valuable lessons while chatting to our housekeeper (Pinkie):

This woman have 12 children (most of which are orphans) and 4 of which live with HIV  ... 2 of which are under the age of 4.

She told me that those first two years were the hardest but that things are much better and life seems normal again ... that all the kids are doing well, enjoying school and healthy (even though they have HIV) ... the hardest thing they are currently enduring is discrimination and living with something that (UNLIKE Cortisone Withdrawal) ... they will never (in this life) be free of... and that they (no matter how hard they try) will never (Unlike cortisone withdrawal) have a normal life ... 

YET in all this Pinkie comforted me saying: "never give up hope and faith ... trust God and pray ... your child will get better ... I promise you"

What an amazing woman!!!

PINKIE

UPDATE ON EDEN'SKIN:

About two weeks ago Eden had a terrible infection in her legs that caused her a great deal of pain and all of us many sleepless nights ... but thankfully our Homeopath attended to her and the infection cleared within 24 hours.

At the moment her skin looks the best I have seen so far in the past 6 months but still when others look at her they do a double-take.

Her Bff and her mom popped by yesterday and told me how beautiful Eden was looking and that they can see drastic improvement ... I feel like we are entering the beginning of her healing phase ... Joey mentioned it starts in the mind ... and I have definitely sensed a change in Eden the past 2 weeks ... she's more cheerful, sleeps better at night, (still scratches, oozes and flakes) but generally doing a lot better.

I feel that her healing is finally starting ... even if it's just in the beginning.

Eden's face, neck, stomach and back seems to be clearing more and more every day. 

Her arms looked terrible up until this past week ... it also seems to be turning around for the better.

 Eden's legs are healing the slowest (due to the constant infections she was picking up) but even though it's not looking perfect ... I (and other people) can definitely see changes and skin clearing and areas healing ... her legs will probably heal last but we'll get there.

Painful legs

We have just entered our 6th month of cortisone withdrawal and poor Eden is going through yet another flare up and in a lot of  pain ... from skin that is burning and flaking and oozing to skin that tore off as the blankets stuck to her legs during the night to painful bones, swollen glands, insomnia and insane itching!!!

But there's beautiful white skin in between all the inflamed red skin and perhaps this is wishful thinking but maybe ... just maybe it's the start of her new skin coming through.

Let's hope this is the light at the end of the tunnel ... even if it's still in the far far very far distance. 

Picture 1: Torn skin from the blankets that stuck to Eden's skin last night :(

Picture 2: Her legs have a purple colouring to it and there's thick skin but white parts at certain areas coming through

Picture 3: lots of tears as a result of torn skin from her blankets that got stuck to her legs last night :(((

Picture 4: Eden's white skin on her hands coming through

 picture 6: her tummy feels

 Picture 7: neck very tight and sore when I wash it but otherwise it's not too bad.

Picture 8 & 9: arms looks a lot better but it's one of the most painful parts (apart from her legs) on her body

 Picture 10, 11 & 12 painful and irritated and itchy legs but beautiful white skin in between the thick inflamed red areas.

Picture 13: still managing a brave smile 

HELL

Eden had insomnia last night ... her skin was on fire ... burning like hell ... NO comfort ... NOTHING that helped ... she cried and jumped up and down and went crazy to no avail. At 3 this morning we were both so tired (having slept absolutely zero hours) ... 

I can honestly say I know what hell on earth feels like ... and so does Eden...we are both so tired of this trial, just hoping and praying and stumbling along trying to get through this.

 

Almost 6 months Cortisone Free

Just an update on Eden's progess (I copied and pasted my forum post below):

Almost at the 6 months mark ... Eden is refusing to bath ... her skin is on fire (AGAIN) for the millionth time the past few months.
She's also developed swollen lymph glands all around her body including the groin area (is this normal??) 
Her breath smells (think tonsillitis is starting again) and our homeopath picked up that she's suffering from Reflux (something she had as a baby).
She complains from extreme back ache and shoulders that ache (not the skin but into the bone).

The skin odour is also there ... it's the strangest smell ... it's not a dirty smell but it's still unpleasant ... it's so weird I can't explain what it smells like (it's very unusual).

She goes through about 1,5litre ointment a week.... constantly applying ointment ... should I see this as an OCD or normal and nothing to worry about?

Her skin is ITCHING ... LIKE CRAAAAAAAZY 

she's still flaking a lot ... I wash her bedding daily ... vacuum and wash floors ... etc etc.

She takes pain killers at night as well as an anti-histamine and then early hours of the morning she wakes up with insomnia but I found an over-the-counter pill called Melatonin (natural hormone) and this helps her sleep again.

What I do find is that even though her skin has red patches, flaky patches, bumps and sores .... there are patches on her skin that seems to be clearing up ... where it seems like normal skin is coming through ... is this the beginning of her healing perhaps?

We were both in tears last night .... it's such an emotionally, physically and spiritually daunting and exhausting time ....

but, the sun still shines brightly every day ... and there's definitely progress .... for example ... she can tolerate the sun now (not for hours and hours but it's a start).... and her appetite is back in FULL FORCE (she use to wear children clothes for ages 11 to 12years) before TSW but now she fits into 7-8years years clothes.... skinny little thing at the moment.

Below are pictures of Eden's legs about 2 months ago ... this was HELL HELL HELL for her 

Currently at almost 6 months: She applies ointment a million times a day hence the shine but sometimes clear fluid runs out of her skin and then it also shines this way (however in this pic it was the ointment).

Also notice the purplish skin colour ... 

In all of this I (we) can DEFINITELY see progress ... it's not an easy road but never for a moment are we looking back.

Anti-Bullying

One of the less noticeable scars of cortisone withdrawal is the amount of bullying, judging and ridicule these people (especially children and teenagers) have to experience.

One expects teasing from children ... even if it's subtle (a mere look often speaks louder than words) ... and sadly a lot of adults give Eden that "look"...in fact I cannot count how many times I have caught adults openly staring (nearly twisting their heads around to see what is going on with Eden's skin) ... and may I add ... it's not just strangers ... but people who actually personally know Eden ... who understands what she is going through and still can't prevent their mouths from hanging open.

My husband often have to calm me down ... in fact restrain me from ripping heads off (figuratively speaking of course).

That being said ... I understand as a mother of a TSW child ... I am over-sensitive and over-protective and the best thing for me is to explain to them (again ... and again ... and again) exactly what Eden is going through and then hope and pray that the message might sink in.

BUT.

What I eventually go fed up with, was the amount of subtle (and open) teasing that Eden endured from children at school.

And I feel strongly that teaching children values such as tolerance, kindness and just plain manners is NOT the responsibility of the school but first and foremost the responsibility of the PARENT!

Eden is now being home-schooled with the help and support of her school (90 % because she is physically struggling and 10 % because she is emotionally struggling ... that emotional percentage might have been higher if it wasn't for the fact that Eden's been attending anti-bullying kiddie courses with her step dad for the past 2 years).

There's a link to that website just below the pages heading (to the right of this page) for those who are interested in Anti-bullying or personal safety & protection.

Local Newspaper article

Our local newspaper interviewed us last week regarding Eden's cortisone free journey.

Below is a pic of the article. and the link to the newspaper website / article link for the fellow itsan group members that would like to read this:

http://www.looklocal.co.za/looklocal/content/en/krugersdorp/krugersdorp-news-general?oid=7758034&sn=Detail&pid=489867&Little-Eden-overcoming-addiction

Who knows....Maybe someone else in SA are looking for answers that can only be answered by ITSAN

How we discovered TSW

Eden was born with a red patch under her neck, it soon spread to the folds of her arms and behind her legs (Doctors informed me that Eden hat Atopic Dermatitis (Eczema) and that she would most likely outgrow it) fast forward to 4 years later:  the cortisone was not helping anymore and the dermatologist prescribed much stronger cortisone creams (one for the face and one for the body) ... by this time her eczema was spreading and the Dermatologist added oral cortisone to the topical cortisone  ... this worked really well  (for the first year) however Eden was gaining a lot of weight due to the cortisone use ... and then after a year her skin started breaking out into an uncontrollable rash ...

It was so frustrating!!! The cortisone would help for a little while ... but then to give her body a break I would take her off the cortisone for a week or two (by the end of those two weeks she would be completely flared up again and back on cortisone for a week) this was an endless painful cycle for the past 4 years until I finally decided that we can't do this anymore!!

I was not feeling comfortable with the use of cortisone anymore ... it wasn't helping ... her body needed something different .... perhaps the chance to learn to heal itself again.

So we cold turkey'd the cortisone use ... and took her to our Homeopath who informed us that it was going to get a whole lot worse before it would get better.

I didn't realize how much worse it would get .. until almost a month later when Eden's first TSW/TCW (topical steroid withdrawal / topical cortisone withdrawal) flare hit ... she was RED all over ... AND not itchy as before but BURNING ... and NOTHING would help the burn.

I started a blog for Eden in the hope that someone would read this that was going through this too ...just for someone to send Eden an email / message to say she will be okay ... that's when I found the following blog:
http://eczemahealing.blogspot.com/
and realized what Eden was going through (a weight was lifted in the form of an answer ... there was help ... and there was hope for her condition and that she was NOT suffering from ECZEMA alone anymore ... but from TOPICAL CORTISONE ADDICTION.)
I then found the ITSAN website and added us to their support group ... where I found a whole lot of other people that was enduring this difficult journey with us ...
www.itsan.org

It was such a comfort to both Eden and myself to look at the before and after pictures of some of these people and to get emails and little messages from people all over the world encouraging us to stay strong and sharing their stories with us.

Now 4 months into her withdrawal and perhaps a 1/4 of the way into her recovery (can't really say how long it's going to take before she's better) but we are not looking back ... so grateful that our prayers have been answered .... for years and years I've been searching ... tried every remedy ... changed her diet ... but nothing helped and finally the dots all connected:  Get rid of the cortisone ... and hold her hand (figurative and literally) when those dark moments and flare ups hit....and with time the flare ups will get further apart and become less intense until it will completely fade away.

BTW :  HAPPY SPRING EVERYONE !!! :)
(Eden was a flower girl at my sisters wedding this past Saturday ... she felt like a princess (we had to cover her arms ... but just look at her beautiful face!!).